It’s Been Awhile…

So sorry about that.  But guess what?  I haven’t been blogging because my life turned upside down, in a good way. Cue the drumroll………….Xeljanz is working!!! It’s been almost 6 months since I starting taking this brand spanking new biologic, and in the 3.5 years since my diagnosis, nothing has worked better!  Here’s where I am now:

1) Back to work! I was on disability for a year, and now I’m back to full-time. Of course, I’m blessed to have a job I love, to work for a flexible company, to have the support of a great manager and team, and to work from home most days. So, I’m lucky. And I work my tail off. Which is good, because Medrol has given me lots of excess tail. All the more reason to focus on #3. 😉

2) On fewer drugs. Unplanned side effects and allergic reactions forced me to pare down my med list, and now, I’ve been able to go further.  On a daily basis, I take 4 drugs for RA, 2 for fibromyalgia, 1 for Sjogren’s, 2 for medication side effects, and 1 pain medication.  And my doses of Medrol and Percocet are both half or less of what they were 6-8 months ago.  The synovitis in my knees and ankles is significant, so I’m not going to drop further, but I’ll take 8mg/day from 32mg/day.  Oh yeah!

One of our many adventures!

One of our many adventures!

3) Exercising! This is HUGE for me. My joints swell during and after, and sometimes it’s hard to motivate, but wow, it feels good. In 2013, I’ve been hiking, biking, walking, swimming, and canoeing.  A few years ago, I promised myself that when I turned 40, I would finish a triathlon.  Not too long ago, I thought I might not make that goal, since I turn 40 this year.  But I just signed up for a sprint tri in late September (my amazing wife and partner in all things is doing the duathlon that day, so we’ll be training together!), and I can’t wait! I’ll walk the entire 5K to finish if I have to…I know I can do this!

4) Fewer doc appointments. I am blessed to have lots of great doctors.  But, it’s strange to be a 30 something with such a big team, and I definitely don’t love that I have to see most of them every 1-3 months.  In the last 2 months, my opthamologist and hematologist dropped me from every 3 to every 6 months, my pain management specialist dropped me from every three months to annually (whoa!), and last week, I had my biggest success.  My rheumatologist, who I’ve been seeing monthly since January 2010, just changed my appointment schedule to every other month. In June, I have exactly ZERO doctor appointments scheduled (assuming I don’t get sick…excuse me while I run and knock on some wood!).

5) Just feeling better! I still have up and down days, of course, but my better days outnumber my worse ones lately.  Fatigue, which has been my worst symptom, has improved noticeably (though it’s still more debilitating than pain…seems harder to just “tough out”). I’m still the “tin woman” every morning, but often for only 1.5 hours these days.  My morning stiffness used to last for double that every morning. The livedo reticularis on my arms and legs is much better, meaning my blood vessels are less inflamed.  I’m still anemic, but my hemoglobin and hematocrit levels have stabilized somewhat.

So, lots of good news, which really means that I’ve been adjusting to a more active life including work and lots more out-and-about fun with Lora and Bear. 🙂 But, I promise to get back here more often.  I’m well aware that things can change in an instant, but I’m savoring every moment, and hoping 2013 has been a year of good news for all of you as well! Drop me a note and let me know how things are, whether you’re taking Xeljanz, another biologic, supporting someone who is, or just stopping by to say ‘hi’.  Thanks so much for your support…I’ve missed you!

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I’m Officially A Guinea Pig!

If you read my last post, you know that over the last 2.5 years, I’ve failed a number of different biologics.  TNF blockers were my last option, and as it turns out, I’m allergic to them.  So, it was looking like I was going to go back to Orencia, which was the best of the worst.

All that changed on November 7th when a new biologic (and the first ever available in pill form) was approved by the FDA.  It’s called Xeljanz.  As of yesterday, my insurance company approved me, so I will be the first patient in my doctor’s practice to start this new treatment.

I’ll admit that I’m more than a little apprehensive about starting a drug that’s brand new to the U.S. market.  However, I’m excited about the prospect of having something new to try, just when it seemed I was out of options – and would be forced to live with the joint damage I’m currently experiencing.

My pills should be here tomorrow, and I’ll be reporting on what happens and how it works as I go.  Wish me luck in the lab!

Pharmaceutical Roulette

 

When you are diagnosed with a chronic disease like Rheumatoid Arthritis (RA), you quickly learn that your life is destined to include medicine.  For many of us, lots of medicine.  Back in 2010, I bought a “days of the week” pill sorter, and I’ve adapted to the weekly ritual of filling it, counting and sorting each medication.  Believe me, when you are battling RA, your hands cannot afford to open 10-15 pill bottles twice a day.

My trusty pill container. I never leave home without it!

I’ll admit that it was tough to adjust to a life of medicine.  What’s more difficult though, is the realization that successful treatment for my illness, and many others, is very much a trial-and-error process.  Until we experience serious illness, many of us believe, naively, that our doctors have the answers.  At least, I know that’s what I thought.  You get sick, you go to the doctor, they diagnose, they prescribe medicine, you take it, and you feel better.  Right?  Wrong.

I am three years into my RA journey.  I see my rheumatologist monthly, and have regular visits with a pain management specialist, a hematologist, a neurologist, an ophthalmologist, and a cardiologist – all for related symptoms and issues.  In other words, I am not neglecting my treatment.  Regardless, my doctors and I still do not have a working treatment plan.  I have continually active disease, joint damage, bone erosions, and nothing (so far) is stopping the march of RA and its autoimmune friends through my body.  What follows is a chronicle of my game of pharmaceutical roulette.

January 2010: Diagnosis
Med Count: 6

For immediate relief, I was put on steroids.  Medrol, to be exact.  I’ve stayed on it for almost 4 years, fluctuating between 4mg and 32mg a day.  Currently, I’m at 14mg a day, which is still far too high for a maintenance dose.  This drug does nothing to stop the disease.  It simply reduces inflammation and pain.  It also carries lovely side effects like weight gain (check), moon face (check), excessive  sweating (check), and adrenal insufficiency (check).  As my friend Dennis would say, it’s a gem. 🙂 But, it keeps me mostly functional, so I keep taking it.  Of course, the goal is to find something that works on the disease  itself, so I can come off my maintenance dose, especially given the long list of side effects.

At the same time, my doctor started me on an anti-malarial called Plaquenil, a common treatment for RA.  She also found that I had extremely low levels of vitamin D (common in those with autoimmune disease), and put me on supplement therapy.  The hope was that these, taken in combination with Celebrex for pain, would begin to control my disease.

The count is six, by the way, because I was already on a beta blocker for my inappropriate sinus tachycardia and Restasis for chronic dry eye.

March 2010: Injection Time!
Med Count: 9

Unfortunately, this combination did not work.  So, I was introduced to a class of drugs called disease modifying anti-rheumatic drugs (DMARDs).  I started with methoxtrexate, which is the gold standard for RA treatment.  I started taking the injectable form of this in March 2010.  It offered a bit of improvement, though my disease continued to be active.

Methotrexate has this nasty habit of removing folic acid from your system, so at the same time, I was put on a prescription dose to replace it.  By this time, I had been on Medrol for three months, and since long-term steroid use can cause osteoporosis, I began taking Fosamax to prevent that side effect.  So far, I have only osteopenia, so I guess it’s working.

June 2010: IVs…Really?
Med Count: 10

When methotrexate alone was not effective, my doctor added my first biologic treatment, a monthly IV infusion of Orencia.  It should be noted that I was not coming off anything I was on at this point.  This was all about adding to what I was taking, trying to find the right biologic and combination of the rest to get my disease under control.

The selection of Orencia was largely a guess.  I had some symptoms that made me high risk for developing multiple sclerosis, which kept my doctor from suggesting the most popular class of biologics.  This was the next best choice, so we gave it a shot.  For the next 6-8 months, I did improve, but probably only 5-10%.  Even with all of the meds I was taking, my doctor increased my steroid dose every few months, to manage my swelling and pain.

At this time, she also prescribed my first more intense pain reliever, called Tramadol.  This provided some additional relief, and on this cocktail, I was able to continue working.  I mostly collapsed every evening and on weekends, but I survived.

Nov 2010: Narcotics Time
Med Count: 11

When I got to the point that I was taking multiple doses of Tramadol every day, my doctor gave me my first narcotic, Vicodin.  We hoped that, with another steroid increase and some stronger pain meds when I needed them, I might need fewer pain meds overall.  Vicodin didn’t help much, so I rarely used it.

March 2011: Allergies
Med Count: 13/12

Eight months into my treatment with Orencia, my disease remained active.  So, my doctor added sulfasalazine and another DMARD called leflunomide.  I handled the first just fine, but had a very bad reaction to leflunomide.  As soon as I added it to my regimen, I was very ill; unable to keep down a meal.  So, that was out as fast as it was in.

It was also this month that I discovered my gluten intolerance.  Minimizing the gluten in my diet has been quite helpful to my digestive system, and has helped me pay very close attention to every ingredient of every food I buy and eat, which is a great thing for me and my family.

September 2011: A New Infusion
Med Count: 13

In July, my doctor and I determined that we needed to move on from Orencia.  These drugs are extremely expensive, running $2000+/month, so unfortunately, the insurance approval process can be lengthy.  Even with my insurance (which is great – I am very blessed!), it took two months to get my approval for Actemra.  Once on a new drug, it can take anywhere from 3-6 months, and sometimes longer, to know if it is working.  So the trial-and-error process is long, arduous, and ultimately, very frustrating.  When I finally began Actemra, one of the newer biologics on the market, I just hoped it would work.

In the meantime, my maintenance dose of Medrol was increased all the way to 32mg a day, in an attempt to keep me functional.  Additionally, I signed a DEA contract, yes – that’s Drug Enforcement Agency, with my doctor for a long-term prescription for Percocet.  In another post, I’ll delve into the humiliating processes required by law for chronic pain patients to get the pain relieving drugs they need.  Suffice it to say, there is substantial room for change.

January 2012: New Year, New Surprises!
Med Count: 15

Biologic drugs weaken the immune system overall, and its ability to fight infection.  After the holidays, I spent time in the hospital, in septic shock from a deadly (for me) combination of a back-to-back common cold and stomach flu.  My blood pressure was dangerously low, my heart rate was dangerously high, and my weakened immune system couldn’t fight without vasopressors administered through a central line.

Unable to move, unable to get out of bed for weeks (even before my hospital stay), I was forced to go on disability from a job I love.  My health was very, very poor, and I wanted answers.  Actemra wasn’t working, and nothing else seemed to be either.  My doctor suspected I had developed fibromyalgia on top of my RA.  When I went to Mayo Clinic for a rheumatology evaluation that month, they agreed with her.

So, I started Cymbalta and Topamax for the fibromyalgia pain, and started seeing a pain management specialist for more treatment options.

June 2012: My Body Rebels, Part 1
Meds 14

I’ve been anemic for a couple of years now, but in May, my regular blood work started showing more severe levels.  So, I got more results, and found that my red blood cells were large, and that they were being destroyed more quickly than they should, a condition called hemolytic anemia.  So, my hematologist and rheumatologist took me off one of my drugs, sulfasalazine, and I started getting additional monthly blood work to check for improvement.

July 2012: My Body Rebels, Part 2
Med Count: 13

The very next month, my liver function tests were abnormal.  So, after 2+ years on methotrexate, I had to stop taking it.  This was a difficult thing to accept, for two reasons.  I was first and foremost concerned about my liver.  I put a lot of stress on it with the medications I take, and hearing that it is behaving abnormally is worrisome.  I also knew that the drug I was giving up was one that helps many people with RA, and I worried about what it meant for my treatment plan.

Also, it was this month that I officially failed Actemra.  Aside from the fact that I now had to restart the 2 month insurance approval process, followed by the 3-6 month “will it work?” process with a new drug, I had another problem.  The remaining biologics available, and the ones most likely to work, were also the ones most risky for me.  Called tumor necrosis factor (TNF) blockers, they consist of the best known and proven biologics on the market: Enbrel, Humira, Simponi, Cimzia, and Remicade.

I had avoided these drugs because they carry a higher risk of developing multiple sclerosis.  I have a number of symptoms that make me high risk anyway, so I elected to stay away from these drugs.  However, Lora and I discussed the options, and decided, despite the risk, to try one.  My doctor documented the contraindication as well as my decision, and fully supported me.   We started Humira, as it seemed to best fit my blood work and profile.  I took a deep breath, and hoped for the best.

September 2012: Double it!
Med Count: 13

The good news was that my approval for Humira took only a week.  After a month though, it wasn’t doing much of anything.  So, my doctor doubled my dose in September, and I started weekly injections.  Within a week, I started to see real improvement in joint pain, stiffness, and fatigue.  It had been almost a year since I had felt anywhere close to this good, and I was thrilled!

October 2012: The Itchy and Scratchy Show
Med Count: 12

Well, the excitement didn’t last long.  The morning after my second weekly Humira injection, I woke up covered in hives.  I knew immediately.  It was an allergic reaction to the drug, and it was devastating.  I got into my doctor right away.  She confirmed, and got me a Medrol-Pack (extra steroids to knock out the allergic reaction in my blood), and some prescription strength Benadryl for my insane itchiness.  As far as a biologic, we decided to try Enbrel, hoping that I would have a different outcome.

My liver functions were still abnormal, so I came off Celebrex, in the hopes that would normalize things.  Otherwise, I was about to add a gastroenterologist to my list of specialists.

November 2012: The Scratching Continues
Med Count: 11

Anyone know the lucky number?

As it turns out, my body and anti-TNF biologics do not get along.  I broke out in hives after my third weekly Enbrel injection, and I’m still battling them as I write this.  I’m starting my second Medrol-Pack with these hives, and still taking anti-itch meds.  My skin feels like sandpaper, and is covered with scabs, though I try as hard as I can not to scratch.

The good news is that my liver function has returned to normal, at least for now.  But, I will not be trying further biologics from this class, which means my options are limited.  Luckily, there is a brand spanking new biologic pill, just approved by the FDA two weeks ago, called Xeljanz.  My doctor and I are meeting on Wednesday, and will be discussing whether I can try that.

I know today’s story is long, but I hope it sheds light on what those with RA face in finding a successful treatment plan.  Ultimately, my number hasn’t come up on the roulette wheel, and in terms of biologics, I’m running out of chips.  The good news is that I have the amazing support of Lora, Bear, our families, and good friends to guide me.  I am confident that by combining pharmaceuticals, healthy eating, meditation, exercise, alternative therapies, and most of all great support and a positive attitude , I will find my way to the winning number eventually.

In the spirit of this week’s holiday, thank you for making your way through my pharmaceutical journey, and for continuing to share and learn with me.  Happy Thanksgiving to you all!

Meningitis and the 2012 Presidential Election

November 6th is just 12 days away, and depending on early voting in your state, your time may already have arrived.  So, I’d like to throw out my endorsement. I know you all have been holding your breath. 🙂 I suspect this:

A)    Will come as no surprise to those of you who know me well.

B)    Will have a slightly smaller impact than that of Former Secretary of State Colin Powell.

My President speaking in my city (Tampa, FL) today!
Photo credit: Scout Tufankjian for Obama for America

There are many, many reasons why I support President Obama again this year.  I believe he is helping to move the economy in the right direction.  He is the only choice for supporters of equal rights for women and LGBT Americans.  Lora and I just got married, but according the federal government and the state where we live, we are no more than strangers!  I could go on for days, but for the purposes of this post, I want to focus on one thing.  Healthcare.  Do I think “Obamacare” is perfect?  Absolutely not.  Do I think doing nothing is infinitely worse, for business, the economy, and especially for Americans?  Absolutely.  To illustrate this, I share my perspective on one current news story.

You have probably heard about the fatal meningitis outbreak caused by tainted methylprednisolone.  As of now, 317 people have been infected, and 24 have died.  It’s horrifying.  This drug is one that many with uncontrolled or flaring rheumatoid arthritis, including me, take daily.  In this instance, the injectable form was used in a procedure called a cervical epidural spinal injection, designed to reduce inflammation, and therefore pain, for a number of different debilitating conditions.

I have had multiple of these injections; my last in June 2012.  It is only by sheer luck that my pain management doctor did not use this compounding pharmacy, or I could be a statistic.  As you might imagine, this sobering fact hit me pretty hard.

If you’ve followed the story, you know that a compounding pharmacy in New England was responsible, and though not regulated by the FDA, this pharmacy and others like it are inexplicably providing these drugs.  This is unacceptable and must change.  Regulations are not optional when human lives are at stake.  Period.

Especially as a “frequent shopper” of the health care system and its pharmaceuticals, I wondered how we got to the point where this could happen, so I dug deeper.  I quickly found the short answer: drug shortages.  These compounding pharmacies are, quite simply, filling a need in the marketplace, something my business brain can understand.  However, given that we’re discussing medicine, and not just any old product, my human brain cannot comprehend.

The reasons for drug shortages are varied and complicated, but there is a glaring one that stands out: corporate profit.  Most of the drugs on the shortage list are older, generic drugs, which don’t make their manufacturers much money.  As an example, there is an older chemotherapy drug, commonly used to fight leukemia in children, called methotrexate that has been on and off the list for the last year.  You may recognize this one from my “Defying Gravity” post, as it is also the most common drug used to treat rheumatoid arthritis. I was affected by the methotrexate shortage about six months ago, as were with thousands in our community. It may not seem like a big deal, until you consider what it would be like to be unable to work or even get out of bed without those drugs. Economic cost indeed.

Methylprednisolone is another, and when FDA- regulated manufacturers didn’t produce enough of the drug to care for patients, compounding pharmacies jumped in to fill the demand.  The result was devastating for hundreds, and to this point, fatal for 24 Americans.  Was lack of corporate profit the only reason for the drug shortage?  Probably not, but it is one very ugly, very alarming part of a complex issue.

And President Obama is the only candidate working to fix it.  A key piece of the Affordable Care Act limits health care companies’ administrative, marketing, and other non-medical costs.  The goal of this is to ensure that the majority of patient premiums are spent on patient care, not kept as profit.  Hopefully, when profit is limited at this step in the supply chain, we will see fewer drug shortages due to lack of corporate profit.  Furthering the solution to this epidemic, the FDA Safety and Innovation Act was signed into law in July.

These solutions are not complete, nor are they foolproof.  They will most certainly need to be adjusted and improved over time.  But after decades of doing nothing while health care costs and corporate profits skyrocketed, the Affordable Care Act represents a bold first step in the right direction.  Additionally, the law provides health care coverage to millions more Americans, as well as those with pre-existing conditions (you know, like Rheumatoid Arthritis), regardless of income or employment status.

He’s got my back, so I’ve got his.
Photo credit: facebook.com/barackobama

Compare our President’s plan to that of Mitt Romney. The former Governor of Massachusetts passed health care reform for his state in 2006, and it has been a success.  Instead of promising to fight for all Americans by further implementing or even improving the Affordable Care Act, his vision for the country involves immediately repealing it.  In its place, he’ll keep the most expensive form of taxpayer health care we have.  Newflash, Governor Romney: emergency rooms don’t cover chronic conditions.

Only one candidate in the 2012 Presidential Election is working for America on this critical issue.  President Obama passed major health care reform in his first term, and will fully implement if granted a second term.  Unfortunately, nothing can save those impacted by the horrors of the meningitis outbreak.  I’m praying for the sick, for the families of those lost, and for an end to the new cases.  Now, we can only hope to learn from this disaster. It starts with our choice on November 6th. President Obama’s got my back, so I’ve got his.